Game on

I had a PET scan in the early part of May. The results showed mild uptake yet again (this is a good thing, no tumor activity) but with more sites of uptake (this is not a good thing, #becausemore).

Given this information and my high CA-125 marker (300+), my oncologist presented the options with a heavier lean toward starting treatment sooner rather than later. There are many choices available (yay, science!) and the one we’re starting with is an infusion every 4 weeks of Doxil.

I start on Monday.

I found this out on Friday.

When I heard the infusion nurse say which day, my first response was, “You mean 3 days from now, Monday?” followed by “Let me check my schedule.”

Let me check my schedule?! Like, I’m going to say, “Oh no, I’m sorry. Monday is no good for me. I’ve got a thing. Can we do Friday or even the week after?”

I did check my schedule, though. Literally nothing was planned for Monday, in a week where I have DO have plans every other evening. So, in shocked panic, I said “Okay, let’s do this,” hung up the phone, and promptly lost my shit.

* * *

I’ve started allowing myself to feel, more deeply, the emotions that sometimes overwhelm me when I allow myself to be present with life as it is.

If I’m sad, I let myself be sad, tucked into bed at 7pm and no dinner in my belly because the desire to eat is non-existent. Fuck this day, I’m done with it, and I’m ending it on my terms. That was Thursday’s mood.

Yesterday, I cried. A lot. From fear. From frustration. From anger.

Mostly though, it’s just practice for getting comfortable with being uncomfortable. To lean into the discomfort of not knowing. Accepting that I’ll never really know what’s going to be next. When you’re free of expectation for the future, you can plant your mind more firmly in the present.

At least, that’s what I’m trying to do. It’s all so much easier said than done. Every day is work.

(Today, I’m doing better.)

* * *

It will take a few rounds of infusions to see if the treatment is effective (CA-125 goes down). If it’s not working as well as we’d like, we can add carboplatin. There are also targeted therapies, like PARP inhibitors. With so many options and many more coming down the pipeline, we are being proactive by starting treatment now.

If I respond well to this drug, I can stay on it indefinitely and it can be used for maintenance. That’s the reality of chronic illness. This won’t be the last time I go through this.

Doxil is supposedly well-tolerated, with the major side effects being extreme sensitivity to sunlight and mouth sores. We’ll just see about all that.

So, in a nutshell: Shit continues to be real, but you know I’ll keep on keepin’ on. I’m approaching my appointment on Monday like it’s an “extended doctor’s visit” (as my wonderful boss put it) and that I’ll continue to live my life as I have.

Let me know you need rides etc I’d like to help! Thanks for he update.. we all need to learn to be comfortable with uncomfortable I am up at 4:17am on Sunday worried about shit… I mean really! LOL Love ya from one OCD to another!